Thank you for doing this, Janelle. I've had LEMS for 18 years now. I was only 24 when diagnosed. I was able to show this to my husband and kids so they could maybe understand it a little better. For those of you who may read this, there are a few support groups on FB for people with LEMS.
Sadly, until I had to switch to Firdapse instead of Ruzurgi I was living a fairly normal life. I was diagnosed in 2001 when my sons were finishing kindergarten and 3rd grade. I was diagnosed quickly and on 3,4 DAP or Ruzurgi I was able to use hiking sticks to walk on the Great Wall and at Machu Picchu including shooting an entire basketball game from the baseline at the Penn State basketball court without using any mobility devices. 4 months later when I could no longer obtain Ruzurgi I began having difficulty with my mobility and for the first time in my life, felt discomfort at numerous times during the day. In 2 years I had 7 seizures.
I have had LEMS for 20 years and I run an online LEMS support group with global membership. Janelle’s story is one I can relate to. I had breast cancer as my LEMS trigger. I have found in my 20 years of supporting LEMS patients that cancer triggers may be less than statistics suggest and other types of cancers can also trigger LEMS. (Para Neoplastic syndrome). Immune suppression as an initial go to for LEMS can be ill advised due to the potential underlying malignancy. Over the years, the stand out miracle drug for LEMS has been RUZURGI (formerly known as 3,4 DAP (or amifampridine BASE form) - base meaning no phosphate salt. Sadly it is now not available in the US. But it is available in Canada and Australia and other countries. It has gotten people out of wheelchairs. Newer versions of it - as attested to by so many of the people I have had in my LEMS support group, have simply and very sadly - not been as effective and have caused nasty side effects.
Just went to the doctor yesterday and my initial assessment was Lambert Eaton Syndrome. I have been struggling in walking, getting up, and climbing stairs and it affects me so bad. Next month is my schedule for my MRI.
It is indeed a difficult disease and has impacted the family. I am sorry for Janelle but yet she does have many positives. Excellent healthcare and access to up to date treatments, such a supportive and loving family and good friends. Not all would have these advantages.
Janelle, I have this disease as well and can relate to your journey and the "new normal" you are learning to accept. Thank you for sharing your story. This disease changes our lives, but you seem to have an incredibly strong spirit, family, and community. Finding support so patients do not feel alone and can navigate the mental health challenges the symptoms can lead to is essential. What a wonderful support group --your husband, family and friends--you are blessed.
I have LEMS and some days it feels like I've experienced the highs and lows of several days in just one day. Each and every moment theres something new. I take Firdaspe and it has improved my strength significantly. Rest is the key. So listen to your body and report all new symptoms.
Thank you for doing this, Janelle. I've had LEMS for 18 years now. I was only 24 when diagnosed. I was able to show this to my husband and kids so they could maybe understand it a little better. For those of you who may read this, there are a few support groups on FB for people with LEMS.
Sadly, until I had to switch to Firdapse instead of Ruzurgi I was living a fairly normal life. I was diagnosed in 2001 when my sons were finishing kindergarten and 3rd grade. I was diagnosed quickly and on 3,4 DAP or Ruzurgi I was able to use hiking sticks to walk on the Great Wall and at Machu Picchu including shooting an entire basketball game from the baseline at the Penn State basketball court without using any mobility devices. 4 months later when I could no longer obtain Ruzurgi I began having difficulty with my mobility and for the first time in my life, felt discomfort at numerous times during the day. In 2 years I had 7 seizures.
Such a shame about the Ruzurgi. So many people adversely affected after losing access.
I've had LEMS since 2019 and every day is a new fight. Wishing Janelle the best.
I have had LEMS for 20 years and I run an online LEMS support group with global membership. Janelle’s story is one I can relate to. I had breast cancer as my LEMS trigger. I have found in my 20 years of supporting LEMS patients that cancer triggers may be less than statistics suggest and other types of cancers can also trigger LEMS. (Para Neoplastic syndrome). Immune suppression as an initial go to for LEMS can be ill advised due to the potential underlying malignancy. Over the years, the stand out miracle drug for LEMS has been RUZURGI (formerly known as 3,4 DAP (or amifampridine BASE form) - base meaning no phosphate salt. Sadly it is now not available in the US. But it is available in Canada and Australia and other countries. It has gotten people out of wheelchairs. Newer versions of it - as attested to by so many of the people I have had in my LEMS support group, have simply and very sadly - not been as effective and have caused nasty side effects.
Just went to the doctor yesterday and my initial assessment was Lambert Eaton Syndrome. I have been struggling in walking, getting up, and climbing stairs and it affects me so bad. Next month is my schedule for my MRI.
It is indeed a difficult disease and has impacted the family. I am sorry for Janelle but yet she does have many positives. Excellent healthcare and access to up to date treatments, such a supportive and loving family and good friends. Not all would have these advantages.
Janelle, I have this disease as well and can relate to your journey and the "new normal" you are learning to accept. Thank you for sharing your story. This disease changes our lives, but you seem to have an incredibly strong spirit, family, and community. Finding support so patients do not feel alone and can navigate the mental health challenges the symptoms can lead to is essential. What a wonderful support group --your husband, family and friends--you are blessed.
This was very educational! I have been diagnosed with MG but it seems I have all the symptoms of LEMS.
I have LEMS and some days it feels like I've experienced the highs and lows of several days in just one day. Each and every moment theres something new. I take Firdaspe and it has improved my strength significantly. Rest is the key. So listen to your body and report all new symptoms.
Condition I never heard of. Thx for sharing
What gorgeous children!
She is lucky for having this kind of husband
God bless you❤
May healing rain pour down on all of you.
😔❤️😔
Autonomic, not automatic.
Please look into doing a strict carnivore diet. There are lots of good videos on it and helps autoimmune diseases immensely.